Tuesday, September 11, 2007

Full Disclosure

I received an e-mail from an autistic man who commented that if he were planning to get married, he would disclose his autism and the fact that it is highly heritable, so that his wife-to-be could make an informed decision about whether she could cope with raising an autistic child.

Generally, I would agree that it's a good idea for anyone contemplating marriage to discuss their expectations about children and other important matters, so as to ensure that their expectations are compatible. If the prospective dad knows he's likely to have an autistic child and plans on spending many happy hours building model trains with the kid, whereas the prospective mom knows nothing about autism and is a social butterfly who wants to enroll the kid in the most popular preschool and have frequent playdates with her friends' children, that probably isn't going to work out very well.

But autism shouldn't be regarded as a defect that a person has an obligation to disclose. Autism is a natural human variation. It's not in the same category as a home seller's duty to tell prospective buyers about a termite infestation or a drainage problem.

To the extent that the autistic husband-to-be in the above scenario feels obligated to discuss autism so that his future wife is not unfairly deprived of the child she expects to have, I would argue that this obligation runs both ways. The prospective wife may not know anything about autism, as such, but she does know that her fiancé is an introverted guy who prefers model trains to socializing. In the interest of fairness, maybe she ought to disclose something like this:

"Honey, before we get married, you need to know that I socialize obsessively. This is a highly heritable neurological condition, and if we have children, they could turn out to be just like me. They'll constantly run in and out of the house with a gaggle of friends, laughing and shrieking. Telephones will be glued to their ears at all times. Their idea of conversation with us will consist mainly of nagging us to drive them to the mall, or the movies, or the roller rink, or wherever their friends happen to be hanging out. Their favorite hobby will be shopping. Would you be able to cope with that?"

14 Comments:

The prospective wife should already have a pretty good idea of what the guy is like. The label is not really relevant, except in practice it could scare her, because she can search the internet, and what will it say? Horrible disease of the brain.

On the other hand, it's probably not good for the guy to actively hide an important part of his identity from a prospective wife.

Joseph, because there are significant differences in early childhood behavior, the prospective wife's knowledge of what the guy is like may not adequately prepare her for raising his kid.

That's probably also true of the guy's knowledge of what she is like, if (like many autistics) he didn't pay close attention to the details of other kids' behavior when he was growing up... he may not have a good idea of what to expect from a more social kid.

"They'll constantly run in and out of the house with a gaggle of friends, laughing and shrieking. Telephones will be glued to their ears at all times. Their idea of conversation with us will consist mainly of nagging us to drive them to the mall, or the movies, or the roller rink, or wherever their friends happen to be hanging out. Their favorite hobby will be shopping."

Someone should have warned us about this behaviour before we had kids! Bloody teenagers! I hope it's a passing phase.

I agree with what you have written. Very much! My husband and I have actually talked, just two nights ago, about how we feel "autism is a natural variation". It is funny you happened to write this.

My hubby had been married briefly about 25 years ago. So when we were talking marriage we actually asked the question of each other "How do you like spending your down time?". His first wife was a "gad-about", always wanting to socialize and party and shop. He preffers staying home--reading or computing. We found out we both like books and crossword puzzles as an activity and that was it.

Knowing what we know now, we both have many autistic tendancies. Back in the day, the system called me shy and low-self esteem. I was just not comfortable and socializing actualy "hurt" and I remember it vividly as a small child. I never did know how to make friends and most kids and teachers thought I was "odd".

What you wrote has so much common sense and bears greatly on reality. I feel autism is a "natural variation". I love the comparisans you made. This is really good!

Of course, in having children, its always a dice game anyway. Children are born with conditions and disabilities all the time, with no warning whatsoever- we don't even know why! It shouldn't be a huge issue; there needs to be more awareness and support before the child is born, so people are not afraid of raising a child who has special needs. Should a child have special needs, they would know where to go and how to help!

Knowing what I now know, I believe tha both me and my husband exhibit autistic behavior at a time or another. Does this make us autistic although we've grown to be fully functional adults who have careers and a family? If we were born today instead of a few decades ago, probably we would be diagnosed with some form of autism. We will never know , though. What I'm getting at is that if there is genetic basis in autism maybe this explains why we have an autistic son. But I'm sure that if I had known about that before I got married, it wouldn't have made a difference at all. And I know that for sure, because I don't regret having my son at all and I'm eager to have another child (or maybe more) despite the "increased" danger of autism striking twice.

I agree with Joseph, its not the label its the person. Since having my autistic son and learning about him, have we all realised my father is autistic! It wouldnt have made any difference if we had known as everyone accepts him for who he is.

A tangential reply:I recently read Queen Bees and Wannabees, and thought to myself 'do NT teenagers actually keep track of all that?' I guess that shows I'd find it a struggle to understand a child of mine who became an NT teenager.I've also noticed that NT kids seem to demand a lot of attention, which is fine if your focus is on playing with the kid, but not if you want to do something else.

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This blog began its journey in May 2005, countering misinformation and stereotypes about autism. The title was chosen to make clear that autistic people are not changelings or aliens, but are human beings who have just as much right to inhabit Planet Earth as anyone else.
Now, as it reaches the end of its five-year mission, I would like to thank my readers and everyone who is working toward understanding and acceptance. May you find blessings wherever you go.
— abfh, May 31, 2010